Amy and Friends - Cockayne Syndrome Support Amy and Friends - Cockayne Syndrome Support
























Bertie Butterfly is kindly sponsored by Holly Lodge School for Girls, Liverpool.

 

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  Brittany's birthday is April 24, 1988.

She was not diagnosed with CS until January 2000 and she also has Klein-Levin Syndrome which is a physiological syndrome. She was actually in the hospital in January 2000 with Klein-Levin symptoms when she was diagnosed with CS. She was not diagnosed with KLS until 2004 when 48 hours had a mystery diagnoses episode and I contacted her neurologist and he did some research and agreed that is indeed what she has.

Brittany has been wearing glasses since she was 5 years old and hearing aids since she was 12 years old. Brittany graduated from high school in June 2009. Brittany has lost all of her sight and most of her hearing, however her hearing aids do still help. Brittany lost a lot of weight in 2010 she went from 50 to 32 pounds so in August 2010 she had a G-tube inserted, since this she has gained 6 pounds and is up to 38 pounds. She really has some problems swallowing so she very rarely eats by mouth anymore.
Due to her blindness she is always irritable and never knows where she is or who she is with, it is very sad, her doctor has put her on Klonopin 25 mg as needed. She is always scared, and she does not even comprehend if she is in the bathtub or not. The last year she has really went downhill. She was put on Varapmil for blood pressure, as we believe that she may of had a couple of strokes because her left side went numb on two occasions and she could not raise her arm or talk for about 20 minutes.

Brittany loved to watch movies, her favourites were Matilda and the Lion King. Her favourite thing to do was to play with her baby dolls which she had probably 30 dolls and loved everyone, she used to want all her dolls on the front porch in the summer and sit there and play with them for hours! Brittany enjoyed school and would cry if ever she was unable to attend. Brittany is happiest when with her Grandma. She loved spending money, if I was at a store she would have to buy something, she may not really want it but had to buy something. A true girl I think!!

   
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Copyright© 2011 Amy and Friends - Cockayne Syndrome UK Charity Number: 1119746